ADVOCACY SPOTLIGHT: A PANS Parent
Thursday, July 22, 2021 at 02:42PM 
This is a series of interviews with influential PANDAS/PANS and Lyme advocates. How do they DO it? How do they contend with their own challenges as well as day-to-day life and advocacy fatigue? What can we learn from these incredible people?
This next interview is with a parent who has been championing legislation in her state. Due to privacy concerns, she wishes to remain anonymous.
Privacy is an issue for many of our advocates. Why? Insurance issues. Mental illness stigma. Families who don't "get it" and are unsupportive. Politics. PANS/PANDAS occurs in 1/200 of the population (at least) yet we see almost no celebrities advocating.
The following interview is with a parent who is upbeat and persevering. She is also angry. Legislation is HARD. I've seen it in my own state--you finally get insurance bills into the Assembly and the Senate and you need to educate the legislators...then the PANDAS parents ghost you. Where's the support? We need to stick together.
Yes, legislation for insurance coverage for PANS/PANDAS is extremely challenging, but at least 8 U.S. states do have laws on the books. Illinois was the first. It's not impossible. Working relentlessly on legislation when you have one or more children at home with these diseases is extremely trying.
How many years have you been a warrior?
I’ve been fighting PANDAS with my child for 5.5 years now.
This is my third year of legislative advocacy.
What have you done to advocate?
I hate my state. It seems to filled with narcissistic politicians who don't care about doing what is right for the people, but proving themselves and their own selfish opinions to be right to the people. Instead of helping people, they are wasting time and money on petty partisan arguments. We sit at the table and look them right in the face and pour our hearts out…. They tend to make you think they care. But, they don't. They only care about the big boys club and their own agendas.
What would help our cause?
If more constituents/parents would actually help DO the work. We've had parents reach out, wanting to "help"... But when they realize they aren't the ones testifying, or they aren't the ones who make the ultimate decisions due to political cautiousness, they don’t want to write flyers, or letters, or message other parents and do the little things that matter. When we ask a group of over 300-400 parents to call specific politicians, and we make it VERY easy to access contact information, and we hear that only 10-15 people on a good day contacted said politicians- then we are all SENDING A VERY CLEAR MESSAGE. The problem here in my state... Is that no one wants to do the work but wants our legislative advocators to give them these great bill-passing results.
I get it, we all have "stuff" on our plates. We all have ill children. Careers and jobs. Families. And not much time. I don’t have time, and I'm doing a great portion of the work along with a few other fabulous parents. It takes 5 minutes to call, email. We need the numbers of people to show up and help.
What do you want people to know?
I wish someone would’ve told me before I began doing this that:
- politicians only care about what they want to care about. Period. Unless they are personally vested and have rank, your efforts mean zilch.
- I wish someone would’ve told me how mean other PANDAS parents can be and downright unappreciative. Some parents have argued with us, tried to tell us we are wrong, barked orders at us. It’s a small few- but they can certainly make us all want to quit everything we are doing. A simple thanks can go very far. Be kind with suggestions and be accepting when we decline your suggestions - its not personal on our end.
- I wish someone would’ve told me that I would be doing this for YEARS.
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